Our Two Reasons (Vision Walk Video / Bardet-Biedl Syndrome)

Easter, 2012

Easter sugar cookies!




Easter Crafts!! We had fun with these all last week!! And, Savannah wore her bunny ears that she had made at school every chance she got! It was so cute!


This is what the Easter Bunny brought Savannah and Xander on Easter morning! Savannah and Xander just love being outside and they really love watering flowers and playing in the dirt!!
Love Savannah's morning hair! Does anyone know where there are a lot of butterflies to catch?


Savannah was so excited! This was the first Easter that Savannah has sort of understand about the Easter Bunny!
Xander just wanted his mommy to hold him.
I only set him down for a few seconds!


The sun was in our eyes so we didn't get a very good family picture.
Savannah couldn't wait to water the flowers!






The next day, we planted Savannah and Xander's flowers! I love his hat!

Savannah had so much fun!Then she watered the sidewalk chalk!She did a great job, didn't she!!
Happy Easter!!!

Dying Easter Eggs

Savannah has been so excited to color Easter eggs all day!! I was so sad about Xander being sick AGAIN, and not really being able to do all the Easter crafts and stuff with everybody, but then, I decided that we would just do them all by ourselves, so this is the first of the many Easter post!!

This is favorite picture of Court with the kids! It's so cute!!!Xander pretty much doesn't let me put him down. Poor guy! But, he is doing so much better today!!

Some very sweet person Easter Egged our house! Thank You!! Savannah had so much fun finding eggs to put into her basket! It really made her day!! And, it is good that you put how many there are to find because, it took us a while to find the last 4. Crazy, I know!
Thank you!!

Savannah really loved making YELLOW eggs! LOL! So Savannah!
One cracked, so we had to eat it!
She is so happy with her pretty, (Many Colors) eggs!! And, poor Xander didn't like that I put him down.
So, I held him again.

Non Hair Damaging Curlers For Girls

At the beginning of the month Savannah was sick for about a week. One day she was feeling a little bit better and let me put these curlers in her hair. It comes with a wand/stick/hook thing. You get your hair damp, Savannah's had some moose in hers from the day before and I just sprayed it with a spray bottle then, pull the curler onto the wand, take about 1/2 and inch pieces of hair, hook the hair onto the wand, and pull it through! It is really like magic!!

You can buy these curlers for different length hair at Sally's!

While I was doing Savannah's hair Savannah and Xander colored and watched Beauty and the Beast. Isn't Bell soo cute and yellow!!And this is Xander's interpretation of art! He is so lucky he is cute!
Thirty or so minutes later.. TA DA!! Savannah was crashing again and wanted to lay down, so I didn't get the best of pictures. If you are in a hurry though, just blow dry the curlers. I do this sometimes on Sundays. It really works and it doesn't ruin her beauitful hair like the curling iron will.

Just imagine if I had hair sprayed and scrunched this gorgeous hair! Just imagine... if she had let me... LOL!

Today, I put the curlers in Savannah's hair again so, you can see how cute the curls are!!

4th Annual Vision Walk For The Foundation Fighting Blindness

Almost 2 years ago we found out that our two sweet children have a rare genetic disease, Bardet-Biedl Syndrome. To this day, I remember when I got the phone call from the geneticist, just after Savannah had her ERG to look at her eyes. I wasn't able to go with her and Court and, they hadn't even gotten back yet. Even though deep down I already knew that that 1% chance was false. I always knew. It was like a waterfall crashing down on me.

One of the most heartbreaking symptoms of BBS is being reminded that Savannah and Xander's sight is deteriorating. It always feels like a jab to my heart. Last week, Savannah said my bright green nail polish is blue and wouldn't believe me that is is really green. I kept trying to explain to her shades of colors, and that it really was green. I just couldn't let it go until she agreed with me. I didn't want her to see a color that it wasn't because colorblindness and night blindness are the first sings. Every time she has to turn on the light of each room she goes in, and how every night she has to sleep with her lamp and room light on. Every time Xander walks right into a wall or Corner, or trips and falls onto the floor because he tripped over a step right in front of him. Or how whenever I point to something Savannah can almost never find it. Every time my heart aches for them a little more.

It make me so sad because it makes me think of all of the things that they might never see again in their futures, how they might never see mine and Court's faces again, or their future families. It breaks my heart to think that they might not be able to see this beauitful world of theirs anymore. All of those little things are what I love to to watch light up their faces, like when Savannah sees a flower and gets so excited and she has to smell it, or when she sees a rain puddle she has to jump in it and make foot prints, And she loves yellow and blue! Xander tries to run outside every opportunity he gets!

The Foundation Fighting Blindness is having their 4th annual Utah Vision Walk on June 16th. It is such a great and important cause that is so close to our hearts. This will be Savannah and Xander's team, Two Little Reason's second year walking and supporting them and other people living with eye degenerative diseases.

This year, our team is going to be having a bake sale to help raise money for the foundation, to help fund research and clinical trials to get us closer in finding a cure for blindness. Because, we know that a cute is in sight! All proceeds will go to the Foundation. But, we need help from friends and family to volunteer for helping with baking, selling, and promoting this bake sale. We have also been looking for a good location. If you would like to help, please email me at nicolelove_123@hotmail.com or leave a comment with your email. I will be setting up a time soon to organize a first meeting. This is so, very important to us and Savannah and Xander. Also, if you would like to join our team and walk with us, and or donate, you can go Here, and just click on walk team, Two Little Reasons. There is no coast to join our team and walk with us. We would love for everyone to join us in supporting Savannah and Xander. Sometimes, it feels as though we can do nothing for them but, through foundations like this there is hope.

Savannah and Xander are our two reasons!

Thank you

Snow Flake Memories

The other day after it had snowed, we went outside to play in the snow before Savannah's bus came. Savannah and Xander were so excited! I love this picture of Savannah! Peanut butter on her face and all!!!

And Xander, even though his coat bundles him up so tightly, he is still my little runaway monster!
He loved the snow just not walking in it!



Catching snowflakes!